AB1728-PARE CASE OF PERIODIC FEVER SYNDROME IN PEDIATRIC PATIENT FROM PARENTS’ AND DOCTORS’ PERSPECTIVES
Authors: I. Romankevych, N. Torres, I. Sanders, L. King, P. Garcia Rodriguez
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> every patient experiment own disease differently as well as their families. Even modern medicine sometimes can't address all explanation to each clinical question, cover all needs and cure all diseases. Rheumatology is one of medical filed with more question than answer sometimes. And this uncertainty usually is difficult for patient. What if doctor can't answer your question? What if treatment patient is asking for is not the best option or even harmful? <h3>Objectives</h3> show through our case different prospective and expectation between parents and doctors view on pediatric patient medical care based on past family experience, standards of medical care and possible future health outcomes. <h3>Methods</h3> analysis of own experience managing patient with periodic fever syndrome. <h3>Results</h3> L., 3 yo boy, originally from country in South America, with past medical history of periodic fever, myelodysplastic syndrome associated with pathologic polymorphism of gene SRP72 (C1384C&gt;T), multiple café au lait spots and autism spectrum disorder was admitted to our hospital due to fever. Fever episodes occurred since 6-month-old (up to 40C), every 3 months and lasted 5-15 days. The episodes associated with rash, conjunctivitis, arthralgias, reactive lymphadenopathy, oral and duodenal ulcers, Raynaud syndrome and elevation of C-reactive protein level. The initially managed the fever with Prednisone due to concerns for an autoimmune condition or PFAPA. The fever responded to steroid in the early course of disorder but haven't had effect with following episodes. Extensive work up has been done. Autoimmune, immunology, oncology was negative, but genetic testing was positive for pathologic polymorphism of gene SRP72. At 18-months of age, he was diagnosed with neutropenia first time. Family history was significant for periodic fever and lupus-like symptoms in his mother and rheumatoid arthritis in maternal uncle. Tests results were inconclusive for possible reason of his symptoms. So, his parents moved to the USA with hope to find some answers. Next comprehensive evaluation has been performed at National Institute of Health in June 2022 and unfortunately studies were still inconclusive and without a certain diagnosis. Only pending test that might shed light on the cause was full genome sequencing. During admission to our hospital with taking into account results of previous evaluations and clinical symptoms that did not completely coincide with any of the common or rare periodic fever disorders, diagnosis of syndrome of undifferentiated recurrent fever was made. A few possible treatments were discussed. Recommendations were against using prednisolone for treatment. Continue treatment at home country or US after establishing care with local medical house were discussed. Excessive discussions with family took place multiple times. However, parents have continued expressed extreme frustration with requests for definitive diagnosis and appropriate treatment. <h3>Discussion</h3> There is no doubt that parent and medical team have the same goals and try to find answers to the same questions. And there is no doubt that understanding and parents' perspectives are different from medical team ones often. Different previous medical experience, no clear answers make waiting without any treatment extremally hard for family. However, modern medicine is matter of tries and hope sometimes. This bring us as doctors to ethical dilemma: <i>what can and what should we do?</i> <h3>Conclusion</h3> it is difficult for parent to make right decision due to numerous biases and expectations. The effort of medical team should be directed to work together with patient family and shared decision making with parents in order to provide the best care to a child. <h3>REFERENCES:</h3> NIL. <h3>Acknowledgements:</h3> NIL. <h3>Disclosure of Interests</h3> None Declared.